Tuesday, January 20, 2009

Day Two

I hardly slept last night so already my day was off to a bad start. About 90 minutes after taking my dose of Valcyte I began to experience horrible anxiety. I really can't describe what it was like. I couldn't relax and my calf muscle felt like it did when my back went out prior to needing an urgent back surgery. Of course, those thoughts didn't help ease my anxiety.

I'd been invited to celebrate a friends birthday while watching Obama's inagauration something I'd been looking forward to for awhile (seeing my friends and the inagauration). My anxiety eased up enough to go for a walk. One would think that going for a walk would be just what I should do to manage the anxiety but it wasn't like that. I was a bit dizzy and lightheaded at times along with the anxiety and was having increased brain fog as well so I didn't trust myself to go outdoors and not pass out.

I went out for a 10 minute walk thankful that I wasn't feeling as bad. I got home to two messages from one of my friends. The first was letting me know where and when to meet them. The second was canceling altogether. Then I got an email saying their phone was down and canceling again. I'm so confused but I'm remembering feelings of high school and being dissed. I'm bummed about it but trying not to dwell. I like seeing people who knew me when I was well. Somehow this seems to bring home the point that I'm ill.

I also got a response from my doctor's office. I'd sent them an email describing what occurred today. My CFIDS doctor says to stop the Valcyte, restart it Sunday and let them know how I'm doing on Monday. Although it's probably a good idea to restart since I had such an intense reaction, part of me wants to just power through this and get it over with. I don't want any more delays. But today was pretty horrible so I'll follow his instructions.

15 comments:

I know 2 people on Valcyte who had bad beginnings and now can't even tell they're on it. Hang in there. I'm glad you are trying it. This could be the answer! But you have summon every ounce of strength and hope you have in the meantime.. I know..I don't get the whole anxiety thing. I have had more of that since starting Famvir. I wonder if it's a form of "herx"?????

Terri - yes, those 2 people had what they would call "floating" anxiety. My is more disabling. I seem to get it when I leave the house and enter "the outside world" I'm letting it go for now, but if continues, I'm gonna need help. I've only been on Famvir a month. Too soon to tell, other than I'm really achy and feel worse. Doc said could be a good sign. Hard to tell with it being winter and all, I think the cold affects me a lot. And if this helps too - aside from moving out of the moldy apt. (which was a great thing to do), look at all you have done and still no recovery. You HAVE to try Valcyte and throw everything you can at this!!! I may even ask for it if the Famvir doesn't come through.

Terri,Anxiety was one of the 1st symptoms I had when this all started back in 2001. Actually, a dry cough and weird wheezing which was never diagnosed was the first, but then that went away and i was left with night time panic attacks and the heart arrythmias (sp?). I worked and functioned fine energy wise until my crash in 2005. Went back to work in 2 months and worked til summer of 2008. And now it's just even worse. Anxiety is through the roof and heart stuff coming back. I don't get it though, I was panic free for 3 years prior to my 2nd crash this summer which I've never been able to come back from. All I'm left with is ???? - question marks..

It sounds like you found a new CFS doctor? I'm so glad to hear that! Hang in there with the Valcyte treatment and listen to your doctor (and your body). I know you've done lots of research and probably know this, but Valcyte can be fairly toxic so be sure your doctor is sending you for bloodwork every few weeks. And a bad reaction to anti-virals is usually a GOOD sign - I know you know all about herxes from your Lyme treatment. Lots of people with CFS who try anti-virals have bad herx reactions. The good news is that many people report the first improvement they notice is in cognitive function & increased mental clarity. You're in my thoughts. Let us know how it goes for you.

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I first became ill in July of 2007. Or at least that's when I started having symptoms that I couldn’t explain away with being too busy, too stressed, not eating enough, not getting enough rest, etc.
In August I passed out while eating in a restaurant. In September I remember climbing some stairs while visiting a museum in SF and feeling a sense of profound fatigue. As I climbed the stairs I thought to myself "it's as if my cells aren't getting enough oxygen"and for a minute worried I might have some sort of leukemia. During lunch I literally had to put my head down to sleep.
By the end of December of 2007 I was housebound due to dizziness, fatigue, cognitive impairment and a myriad of other symptoms.
I'd completed my dissertation in 2006 and awarded my PhD in Jan 07. I'd always been active, athletic, driven.
Imagine my surprise when this all happened. It's been a life changer.
This illness is not for the faint of heart. 20% of people with cfids commit suicide. It's a fact. The illness is that devastating. I used to believe that cancer was the worst thing one could have. I no longer believe that.
Luckily I plan on getting as well as I can with the right help